I’ve been concentrating so much on writing my SI joint blog recently that I haven’t been writing so much about pain science, in general.

But the past few weeks, it’s been hot. Really hot.

And now I’m reminded, on a personal level, how central sensitization really isn’t just about pain. Instead, it’s about everything our central nervous system is responsible for regulating… and the fact that our ability to regulate it has been thrown off.

Something that should be so small, for another person… for people with central sensitization, it can be huge.

I’m about to tell you why I’ve been so miserable, and why, so far, I’ve spent most of the weekend just lying on my bed.

As I write this, I feel like what I’m going to say sounds so silly, so benign. But this is the reality of struggling with central sensitization– our symptoms can sound ridiculous to other people. They can even sound ridiculous to us. But they are still happening.

So I will tell you that my apartment is too hot.

I should spare you the boring details, but this post won’t make sense if I don’t explain that this is my first summer in this new apartment. I don’t have central AC in this place, as I have in summers past. I’ve been trying to get away with one small window air conditioner for my whole place, and it’s been an epic fail.

I know what I’m saying might sound ridiculous to the average person. Because it’s not really a big deal, right? Just buy another air conditioner and move on.

But for me, this situation is reminding me, so strongly, that I really do have a problem with central sensitization.

Because sometimes, my body doesn’t let me just “move on.” It’s not just like I just noticed that I felt hot. I’ve been exhausted.

I feel like I didn’t get any warning. I didn’t just have some mild discomfort and then think “oh, I should probably do something about the fact that my apartment is so hot.”

Instead, it hit me like a ton of bricks. Like a virus.

Originally, I’d wanted to wait and see if one AC was enough, before buying a second. When it first started to get hot a few weeks ago, I thought I could just spend most of my time in the bedroom (my air conditioned room) and limit my time in the rest of the place.

But no.

As the summer’s gotten hotter, I’ve found that I don’t just get hot. I get exhausted, quickly: I can’t think clearly. I go on anxiety spirals.

I’ve constantly felt like I’ve been coming down with something… but I haven’t actually gotten sick.

If I leave my air conditioned bedroom and walk into the 82-degree living room for 5 minutes, I get dizzy.

This is crazy, right? I know it sounds crazy. It doesn’t make sense!

But that doesn’t mean I’m not also experiencing it.

I noticed that if I retreat back to my 74-degree bedroom, after about 20 minutes, I’ll start to feel calm again. My anxiety will go away, and my thoughts will become rational again.

But apparently, I really can’t handle even the back and forth to the rest of the apartment, even if I have my cool bedroom to go back to.

I know plenty of people who live this way, no problem.

And I know a few people who barely use their air conditioners at all.

I know that what I’m experiencing sounds extreme. And yet, it’s happening.

I think it’s a heightened version of the way everyone gets tired, when they’re overheated. It’s how our body protects us, by forcing us to stay still and keep cool.

Only my body is perceiving the walk from my bedroom to the kitchen as a threat to homeostasis– or, in other words, its ability to keep things regulated.

Research

Honestly, I was getting pretty upset, when I remembered to do what I always do, in the end: slow down. Take a deep breath. And do some reading. Remember that there is a name for what I’m experiencing, and that I always feel better when I try to learn about it.

So I went back and watched my favorite video from Dr. Sletten at the Mayo Clinic:

I shared this video in my last post too… I guess I probably can’t share it in every post (or can I?!). But it really pulled me out of the depths of despair right now, so of course I had to share it again. (Thank you, Dr. Sletten! I’ve never met you but I feel like I’m your biggest Internet fan!).

This video is really the most reassuring thing I’ve found out there.

In the first screenshot, which I took at the 2:30 mark, Dr. Sletten outlines some of the various systems our body uses to maintain homeostasis:

He explains, “If you’re too hot, you might to go to a place to cool off. If you’re thirsty, you might drink some water. If you have to go the bathroom, you go to the bathroom.” These are all ways in which we respond to the input that our peripheral nervous system gives us, in order to take care of our body.

As he says, “The signal itself is not abnormal.”

The problem sets in when these signals get upregulated– meaning a stronger and stronger signal gets sent to the brain.

The somatosensory cortex is the part of our brain that processes all of these sensations coming from our body. When these signals are upregulated, that means they’re stronger and more uncomfortable.

In the red marker below, you can see where he wrote a list of some of the sensations and triggers that can arise when the nervous system has been sensitized. He included temperature as a potential trigger, as well as a change in barometric pressure (which I, personally, haven’t experienced, but I would imagine this would make people feel as crazy as I feel right now).

So, honestly.. I don’t really know how to fix this.

I’ve come a long way in managing the chronic musculoskeletal pain aspect of this, using an awesome approach called pain neurophysiology education. But that doesn’t mean that central sensitization is completely reversible (although new treatments are being researched every day!).

For now, I personally feel better if I can just learn about it.

To know there are other people out there going through the same thing, and that there are doctors and researchers out there who won’t think I’m crazy. To know that it’s not “in my head,” although it is in my nervous system.

I just need to know this about myself. I have symptoms of central sensitization, and one of them is that I don’t handle heat well. Temperature is not something I can be too flexible with.

Does anyone else out there experience this?

I know this post was not my normal cheerful, upbeat post. I’m genuinely curious if anyone else out there goes through this.

Dr. Sletten’s video helped me a lot, but if anyone else out there feels the same way, please let me know!

And, whether or not heat is a factor for you, I hope you’re enjoying the summer!

I recently heard from a reader who was looking for some suggestions on where to turn next, in terms of finding a medical professional to help him. He said he’d been struggling with central sensitization syndrome for three years now, and had yet to receive any significant help.

I thought his advice might be useful for many of you, so here’s what I said.

First, I recommended he watch this incredible video from Dr. Sletten of the Mayo Clinic, talking about the various causes and symptoms of CS.

Basically, this video is so awesome, I cried the first time I watched it. Not, of course, because it was so awful, but because it made me feel validated in a way I truly wasn’t expecting.

In other words, it takes all of these normal, everyday bodily sensations that our nervous systems depend on in order for us to survive– and it turns the intensity WAY up.

On my blog, I have written about this the most in terms of pain. You can feel a light touch on your skin, and have it be excruciatingly painful. Your nervous system is magnifying the sensation.

But there are many other types of stimuli and sensations that our nervous systems can experience more intensely. Noise, in my experience, can be a big one. If someone’s making noise– say, doing construction on the building next door, it can really throw me off and ruin my entire day. It’s like I just can’t block it out.

Heat, to me personally, is another one. I’ve been thinking about that a LOT recently, as we’ve had a wave of 95 degree July weather here in Massachusetts. It’s like… other people can sort of brush it off. With me, it’s like it heats me up to my very core and I just can’t think clearly. (Then I start to experience anxiety, which has been TONS of fun!).

So… back to our main topic.

This reader wanted to know if I had any suggestions for how he could look for help. (He didn’t give me any specifics about his symptoms, or what exactly he’d already tried). So here is my answer, written for a general audience.

It would be really great if you could find help in one place.

For example, the video from above is from the Mayo Clinic’s Pain Rehabilitation Center in Florida. This type of a program, ideally, is geared towards helping people with complex pain problems.

If you have the option of attending such a program, I certainly recommend it! However, this type of program is few and far between, and I’ll be honest with you– I think a lot of other pain clinics have a ways to go, despite how good they look on paper. (You can read about my disappointing experience at a pain clinic here in Boston a few years ago).

So, while I certainly don’t want to discourage anyone from seeking out help where appropriate, I want this post to provide additional options for people for whom that isn’t an option (or it didn’t work).

What I personally did to manage my symptoms was to work with the appropriate specialist to address each set of symptoms I was experiencing. Here are some examples, for symptoms that are common in people with CS:

Musculoskeletal Pain

The person who helped me the most with my chronic pain was actually a PT. He truly changed my life. He had advanced training in something called pain neurophysiology education, which taught me to view my pain as something that was there to protect me.

As a result, I learned to work with my nervous system, not against it. I developed a much better sense for when it was okay to push through the pain, and when I really had no choice but to sit and rest. PNE can’t take away all your pain, but it can help you learn how to work around it (which dramatically reduces the cycle of having setbacks).

There’s also a type of specialist called a physiatrist who specializes in musculoskeletal pain. Physiatrists work in the specialty Physical Medicine and Rehabilitation. Basically, they specialize in all of the ways to treat musculoskeletal pain, and they are trained to look at the whole person, rather than focusing in on one body part.

A physiatrist may ask you about your daily life, and how your sleep is. They may offer you medications such as Lyrica or Cymbalta (see below). They may also offer different types of injections, such as trigger point injections, to help with muscle tightness. In general, they can help you think of solutions you may not have thought of.

Other, non-musculoskeletal symptoms

There are definitely other symptoms and conditions that can be caused by central sensitization. Again, let’s remember that with CS, you’re taking what would have been a normal, helpful bodily sensation and making it extremely intense.

Digestive System

One type of sensation that can be intensified is in your digestive system– what’s commonly known as irritable bowel syndrome.

If you’re having these symptoms, it’s really important that you follow up with a gastroenterologist, to make sure there isn’t anything else going on that could be causing your symptoms.

It may be easy, for example, for your primary care doctor to tell you that it’s stress, or that it’s irritable bowel syndrome, but really, you want to talk to an expert, to make sure it isn’t anything else.

If your GI doctor doesn’t find anything else going on, then it’s time to look into solutions. There are a wide range of treatment options out there for IBS– there are medications you can take, and you can work with a nutritionist to eliminate dietary triggers. Stress, of course, is a bigger trigger and it’s important to learn how it affects you. But keep in mind that it is not the only factor, which is why you should investigate all of your options.

Bladder

Another sensation that can be intensified is the sensation that your bladder is full. This is one of the potential causes of a condition called interstitial cystitis, which many people with CS/fibromyalgia have.

However, there are other potential causes as well– an issue with the lining of the bladder, or a possible bacterial infection.

So again, it’s important to consult with a specialist (in this case, a urologist) to make sure you aren’t missing something bigger.

Headaches/Fatigue/Dizziness

These are also some common symptoms of CS/fibromyalgia. However, like everything else, it’s really important to make sure that’s all it is, and there isn’t anything wonky going on in your nervous system.

Your primary doctor, of course, will be the one to direct you where to go in all of these cases, but just to give you an idea, these symptoms would probably be good to check out with a neurologist.

What you will likely find is that all of these specialties will be familiar with CS, as it relates to their own system of the body.

Each specialist may use slightly different terminology, or explain it to you in a different way. A physiatrist will be talking to about pain. A gastroenterologist will be talking to you about different types of sensations, as will a neurologist.

But ultimately, these are all different ways of looking at the same thing– the fact that your nervous system is processing information differently than it used to.

So… it isn’t really possible to get help for all of your symptoms from one person. Because you need to get the information from a specialist.

There is no one specialist you can see who’d be able to rule out other potential problems in your joints, in your digestive system, in your bladder, etc. You have to go to someone with specialized knowledge, for each of these different types of symptoms.

So, in the end, I think the most important thing is that you have a supportive and thorough primary care doctor.

You will need this person on board to direct your care, write referrals, etc.

I have recently had an epiphany that there are probably better primary care doctors out there than the one I was seeing.

Today I wanted to share with you this post from my friend Clare over at Jelly-Like Joints.

Clare is a science-lover and “bookish crafter” –a book lover who also enjoys arts and crafts. She was born with a genetic condition that affects her connective tissues. This causes her to have hypermobile joints, along with chronic pain and other symptoms.

In her post, Clare writes about how she’s been struggling with some new symptoms lately, specifically in regards to her voice. (Connective tissue disorders can cause a wide range of symptoms, because connective tissue can be found just about everywhere in your body).

I wanted to share her post with you because I really admired her mindset– it’s the approach I try to take as well, when I have setbacks.

Which is to take a step back and say, ok. I have this new problem I wasn’t expecting. But that also means there are new potential solutions out there I haven’t tried.

Of course, this is easier said than done. And I admit, it is not always my immediate reaction. But when I work through the anger and frustration, this is usually the point I get to that feels right, that lets me know I’m on the right path.

Keep going. Don’t stop looking for answers.

So what I really admired about Clare’s post is how, not only is she mentioning things that could be helpful to her, she keeps trying to help others at the same time.

You may notice that she’s included a link to one of my blog posts ;) I also struggle with hypermobile joints, however mine are hypermobile for a different reason. I am very fortunate not to have a connective tissue disorder… I was just born with joints that don’t fit together in the most stable way, making them more prone to pain and potential injury. (It just happens to some people, through luck of the genetic lottery).

I also really thought the part about the acupressure mat was interesting. For those that don’t know, the term proprioception means a general awareness of where your body is in space, and the different stimuli affecting it. Our sense of balance, for example, depends on different types of proprioceptive input through our nervous system.

Sometimes when we have a chronic illness, or injury, or chronic pain, our sense of proprioception to different parts of our body can be impeded, so an important part of therapy is to help the nervous system “remember” to check for different types of information.

That is something the acupressure mat could do, by giving TONS of information to our nervous system about what’s going on with your feet! So I thought that was cool.

Anyway, I hope you’re doing well, and that you all head on over to check out Jelly-Like Joints!

Technically, I suppose it’s bad form to brag about how much traffic you’ve been getting on your blog.

However, I feel like it’s a little different when a positive message comes with the bragging, so I wanted to share some of my updates with you all.

I’ve come so far from where I was when I wrote my first post about the sacroiliac joint. Despite everything I’d already been through with central sensitization and learning to believe in myself, I still had trouble taking myself seriously when it came to the SI joints.

I mean, I remember why I thought that way, when none of the doctors or physical therapists I saw seemed to know what I was talking about.

But now I know from running my blogs, and hearing from all of the readers who’ve shared their stories with me, that I was far from alone. I’ve been hearing from so many different people, and I think it’s safe to say that just about everyone who struggles with SI joint dysfunction feels this same way at first.

So, a big thank you to everyone who’s shared their story with me. Technically, you’ve been reaching out to me for help, but in the end, I think I’ve benefited as much as you. It’s meant so much to me to know that I was never alone, either, and that the topic I was so afraid to write about is now the topic that’s getting me the most views.

In that spirit, I wanted to share my traffic stats from February with you. My traffic over on My Sacroiliac Joint Saga has been increasing each month, and in February it hit an all-time high, of over 15,000 views.

While I wish Sunlight in Winter got anywhere near this much traffic, it just goes to show how many people there are out there looking for information on SI joint dysfunction.

I wish I could show you all of the meaningful emails I’ve gotten, but since I keep all my messages confidential, these numbers will have to do.

But to me, sharing these numbers with you isn’t about bragging– it’s about proof that good can come from sharing the parts of your story you think no one will want to hear.

She’s a therapist who is dealing with chronic illness. Recently, she wrote about her experience attending a chronic pain support group that incorporated some of the theories of modern pain science… but did so very badly.

As someone who fervently believes in what pain science has to offer — it’s what originally inspired me to become a physical therapist– I have often felt many of her same frustrations, when people try to stretch pain science beyond the limits of its intended applications, or when they lump in their own personal beliefs about pain which have nothing to do with the actual scientific literature on the subject.

Reading her post, it sounds as though the social worker leading the class did have a basic understanding of pain science.

(By modern pain science, I mean the school of thought that says that pain is a function of our brains that’s meant to protect us, and as a protective mechanism, it doesn’t always work perfectly, or give us an accurate way to gauge what’s actually happening in our bodies. People can experience devastating injuries and feel no pain, or they can experience excruciating pain from injuries that are technically “minor.” Pain scientists believe this knowledge can help us develop new treatment approaches, once we begin to tap into the fact that pain is here to protect us. Some of the original proponents of this approach include David Butler and Lorimer Moseley).

It sounds as though Chronically Undiagnosed’s group leader did present some of these anecdotes, to prove that pain can be subjective. But she did so in a way that was alienating to the group participants.

“The instructors have cited reports of individuals who have either been injured and experienced no pain, or individuals who thought they were injured (but were not) and experienced extreme pain. One example was of a roofer who landed on a 6-inch nail that went through his steel toed boot who presented in the E.R with reports of excruciating pain. He was medicated for pain and the boot removed where it was discovered that the nail had gone through his shoe but between his toes, resulting in zero tissue damage. Additionally pictures of MRI’s were shown where a person had visible spine damage but no pain.

As someone with an advanced degree who has studied and taught research and statistics, I find fault with their examples. In a scientifically based research study, extreme results such as these are considered “outliers” and are not considered statistically significant. And as someone who has both counseled patients with chronic pain and experienced it daily for over 5 years, I find their assumptions to be not only scientifically incorrect but harmful to people experiencing chronic pain.

And now here come the people touting “modern pain science” as a breakthrough in treating pain. If pain is simply a perception created by the brain, then if we change our brains the pain should go away. When I expressed my concerns to the leader of the group she suggested that leading medical institutions in our country (such as Stanford, where I received “injections” that helped me) are “behind” in understanding pain.”

Reading about her experience made me really frustrated and sad, because I had a totally opposite experience when first presented with this information.

However, when I first came across it (under the guidance of my physical therapist Tim, and through watching physiotherapist Neil Pearson‘s lectures) I understood these stories– which ARE statistical outliers– to simply be examples illustrating how pain works.

They are extreme examples, but they demonstrate the fact that pain does not always provide an accurate indication of what is wrong in our bodies. These stories are meant to educate, not to give people the impression that they ought to be able to magically “turn off” the pain in their brains tomorrow.

Following this, it sounds as though the social worker leading the group made another key mistake, one that I absolutely can’t stand:

She lumped her own personal beliefs about pain in with the theories of modern pain science, without making any distinction in between the two.

Years later, when I had finally discovered pain neurophysiology education, I found that the people actually researching modern pain science never talked about childhood trauma (or any other kind of psychological trauma). They didn’t need to– the theory of pain as an imperfect protective mechanism was enough to explain so many of the things that could sometimes go wrong with it.

That’s not to say that no one, ever, experiences physical pain as a result of emotional trauma. That’s not what I’m trying to say either. But it’s wrong to be leading a group where you’re presenting people with the theories of modern pain science, and lump in your own personal beliefs about pain without making a distinction.

She did actually lump in other grains of truth.

Some of the other information Chronically Undiagnosed’s social worker presented is, technically, legitimate.

It is true that MRI’s are not always the best predictors of who will actually experience back pain. There’s a great book, Back Sense, that talks about this.

In a nutshell, if you were to take 100 people off the street and take an MRI of everyone’s spine, you wouldn’t necessarily be able to tell, just by looking at the MRI’s, who was actually experiencing back pain.

We all experience some degeneration to our spines over time, but sometimes this degeneration can be symptom-less.

However, this information should never be used to tell a group of chronic pain patients they shouldn’t be experiencing any pain!

All of these bits of knowledge, which can be helpful– whether it’s pain science, or Back Sense– are meant to be one piece of the puzzle!

And they are meant to help illuminate aspects of patients’ experience. They are meant to educate.

They are not meant to blame people, or make them feel responsible for experiencing pain they shouldn’t be feeling!

I see this far too often in the field of pain science.

As a (hopeful) future physical therapist, I’ve followed a number of physical therapists, writers, and researchers on various social media platforms, hoping to learn more about how the field of pain science is evolving.

Unfortunately, I’ve had to go back and actually “unfollow” a bunch of people, because I see the same thing over and over again. People will get annoyed and actually downright snarky about patients and fellow medical professionals trying to treat certain conditions which are the subject of controversy– the sort of “gray areas.”

One of these areas, in particular, is the sacroiliac joint. There are a lot of physical therapists out there who don’t believe sacroiliac joint dysfunction is a real thing.

So I’ll sign on to Twitter, and find that someone I respected and followed to learn more about pain science is tweeting out some kind of derogatory commentary about how “the sacroiliac joint doesn’t really move” and what a “sham” it is that people are trying to treat it.

I suppose the evidence for sacroiliac joint dysfunction is really a topic for another post, however to me it’s just another example of people trying to take pain science too far.

Ultimately, I believe these physical therapists’ anger stems from a good place. From their perspective, they’re probably tired of seeing other medical professionals “waste” patients’ time by treating them for musculoskeletal causes of pain, when they should be focusing on the nervous system.

But that doesn’t mean patients’ pain isn’t valid. That doesn’t mean that, once you put them in a 3-hour class where they hear about extreme examples of people not experiencing pain, they should automatically be able to “turn off” their own pain.

No approach will work if you don’t listen to people. No approach will work if you aren’t kind. That’s really the bottom line.

Pain science should be used to educate– not to deny the other potential reasons someone could be experiencing pain.

Just as MRI’s aren’t always accurate indicators of who will have back pain, it doesn’t mean that someone in excruciating pain shouldn’t have an MRI.

All of these things represent aspects of the truth, but no one piece should ever be a substitute for looking at the whole picture.

P.S. Please don’t worry, there are plenty of ways to learn about pain science from people who actually do get it!